Author Topic: Progression question  (Read 223 times)

Cindy

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Progression question
« on: July 25, 2020, 08:17:44 PM »
I hope everyone had a pain free day. I been diagnosed with sicca and fibromyalgia for a little over 8 years. My Sjogrens symptoms are dryness, fatigue, muscle pain, interstitial cystitis, ear ringing.... I say sicca because my blood tests are all negative and my rheumatologist says a lip biopsy is not necessary.

I have a question for you, most of the things I read online says early diagnosis is important so the possibility of organ involvement is less. How is this possible if most doctors don’t prescribe big drugs unless you have major organ involvement? What else besides plaquenil could be taken to help sjogrens? I know there’s nothing to stop the progression, but I’m just wondering..... I took plaquenil for 2 years and took Elmiron two years after stopping plaquenil for my IC but stopped it when research showed it causes retina damage. Right now I’m taking LDN and vitamins.

I’m just wondering if there’s something else beside plaquenil that can be given prior to getting more sjogrens problems.

I know every patient is different and this is not a place to recommend what to and not to take. I’m just want to hear from your personal experience.

araminta

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Re: Progression question
« Reply #1 on: July 26, 2020, 03:23:40 AM »
I don't know the answer to your question, but am wondering if Sjogrens does always progress?   I was kind of hoping it might flatten out some time, at least for some of us.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Jenny

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Re: Progression question
« Reply #2 on: July 26, 2020, 04:00:43 AM »
I don?t think it always progresses. I was diagnosed 15 years ago and went on Plaquenel for a few years. I decided it really wasn?t helping me and went off of it. When my rheumatologist left the country a few years ago, I never found a new one. I don?t feel like I have changed one bit in over 10 years. No worse, no better. Hopefully it stays that way.
65 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Fibromyalgia, Osteoarthritis .
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sixty

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Re: Progression question
« Reply #3 on: July 26, 2020, 06:40:10 AM »
I can tell you that in my case, it certainly changes all the time.  Not necessarily progression.

Cindy

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Re: Progression question
« Reply #4 on: July 26, 2020, 08:53:27 AM »
Thank you for your response, it’s good to know that for some people it has stay the same. I’m praying I stay the same at least until my kids are older.

Carolina

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Re: Progression question
« Reply #5 on: July 26, 2020, 09:07:48 AM »
Dear Cindy,

I can't speak from experience, but I know that Methotrexate, and some of the biologicals are given as treatment, as well as Plaquenil.

https://www.sjogrens.org/understanding-sjogrens/treatment

My 'Sjogren's-like' condition is caused by my Immune System attacking my organs and systems, not with autoantibodies but with cytokines. 

The results are the same.  So far I have damage to my moisture system like Sjogren's, lung damage, IC, profound peripheral neuropathy which has destroyed the nerves in my lower legs and feet and so I have leg braces and walk with a walker. 

I also have Small Fiber Neuropathy which makes me feel as if my skin is on fire.  Finally, my gastrointestinal system has nerve damage, both in my esophagus and small intestine.

I also have Primary Immune Deficiency (yep, my rampaging immune system attacks my body, but doesn't protect me from disease).  So I have IVIG every four weeks, and have had since 2013, and will for the rest of my life.  At least the constant infections were stopped with the infusions of IgG.

18 years ago,I started with 'dry eye/dry mouth' and began the decline into disability.

The vast majority of people with the diagnosis of Sjogren's Syndrome manage the symptoms, and go on with a 'normal' life, and no progression to other problems.

This forum has been the source of information, support, humor, and has saved my sanity.

Regards, Elaine
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jazzlover

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Re: Progression question
« Reply #6 on: July 26, 2020, 02:39:09 PM »
I've had Sjogren's for at least 15 years and I have not taken anything for it. I would say I'm about the same.

I also have Mast Cell Activation Syndrome and that is worse for me than anything else. MANY MANY MCAS patients have IC .. so definitely look into that.

As for ringing in the ears, mine is from the high levels of histamine in my body (MCAS) ..and gets worse when I eat foods containing high levels of salicylates. Same issue if I ingest aspirin. (Which I now know NOT to do)

Since you are sero-negative, you might want to do some research.

(PS .. I was diagnosed with Fibromyalgia 40 years ago)

Blessings!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Joe S.

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Re: Progression question
« Reply #7 on: July 28, 2020, 08:05:02 PM »
Having problems taking plaquenil and methotrexate,  I have gone to supplements.  I take Acetyl-L-Carnitine to repair mitochondria DNA damage. I take R-Lipoic Acid to remove the debris from the repair. A 6oz glass of carrot juice gives your body what it needs to create endorphins.  Reflexology tells those endorphins where to go in your body. CBD oil can help modulate you pain to a lower level.

For arthritis,  I take Tart Cherry Extract to reduce Uric Acid. I take curcumin to reduce inflammation.  I also take boswellia to tell my immune system to not attack the arthritis. Carrot juice and CBD oil/lotion to help with the pain.

There are enough other supplements and medications that I take to consider it a small meal.
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